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Understanding Breathing
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Congenital Central Hypoventilation Syndrome
Donate Today
What is CCHS
Overview
Signs and Symptoms
Diagnosis
Related Conditions
Understanding Breathing
Understanding the Genetics
Routine Monitoring
Treatment and Transitions
Neurological Development and CCHS
Register
US Registration
International Registration
CCHS and Social Media
CCHS Life
Connecting with other CCHS Families
Sharing Stories
Transitioning to Independence
Adult Stories of Independence
Resources
Treatment and Medications
CCHS Literature
Genetic Testing Centers
Physician List
Links to Other Groups
Get Involved
Donate
Plan a Fundraiser
Corporate Partners
Volunteer
Research
One World Registry
Funded Research Projects
Clinical Trials
CCHS Grant Awards
CCHS Network Call For Research 2022
Events
CCHS Day 2021: Turning the Tide
2018 Conference
CCHS Day Archive
CCHS Webinar
About
Our Story
Executive and Advisory Boards
Research Advisory Board
CCHS Foundation Advisory Board
Helpful Literature on CCHS: Some Sources to Get You Started
Diaphragm Pacing without Tracheostomy in Congenital Central Hypoventilation Syndrome Patients
keens-2016-diaphragmpacingwithouttrachcchs-diep-2015.pdf
American Thoracic Society Statement on CCHS (2010)
(PDF Publicly Available Online)
http://www.thoracic.org/statements/resources/pldd/congenital-central-hypoventilation-syndrome.pdf
Cardiac (and Other Care) Issues in CCHS
http://rarediseases.org/rare-diseases/congenital-central-hypoventilation-syndrome/
Study of 196 CCHS Patients: Their Issues and Care
(by CCHS Network Founder, Dr. M. Vanderlaan)
http://www.normanet.ne.jp/~cchs/PDF/Epidemiologic%20Survey%20of%20196%20Patients.pdf
Phrenic Nerve Pacing in CCHS
http://www.thoracic.org/patients/patient-resources/resources/diaphragm-pacing-online.pdf
http://www.chla.org/diaphragm-pacing
http://www.ncbi.nlm.nih.gov/pubmed/25598098
Proceedings of the 4th International Conference on CCHS, Warsaw Poland, 2012
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4268904/
Flying/Traveling With a Ventilator
http://www.ventusers.org/edu/valnews/val17-3c.html
http://www.miusa.org/resource/tipsheet/ventilators
http://www.united.com/web/en-US/content/travel/specialneeds/disabilities/customer_ventilators.aspx